Thursday, June 07, 2012

New Brunswick STILL Needs a Modern Adult Autism Residential Care and Treatment Facility

Restigouche Regional Hospital, Campbellton New Brunswick

Centracare Long Term Mental Health Services Center, 
Saint John New Brunswick

New Brunswick adults with severe autism disorders need an alternative to the Centracare and Restigouche hospital models as recommended by NB Autism Expert Paul McDonnell in a 2010 CBC Analysis :

"We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."

A young Saint John New Brunswick woman has, thankfully, found a new home in a special care facility as reported by CBC in Autistic Saint John woman finds new home. The article indicates that the young woman's mother is relieved but is still concerned about her daughter's future.  The mother's concerns are similar to my own concerns about my son and severely autistic adults in New Brunswick.  Everyone should be concerned.  New Brunswick governments, both Liberal and Conservative, have pretended to deliberate on this issue for years without providing a real solution for the long term residential care and treatment needs of adults with severe autism issues.

There is a reference in the article to the review of youth mental health needs by former Ombudsman Bernard Richard.  What the article does not address is the fact that Mr. Richard and his advisers at the Office of the Ombudsman refused during the review in which I participated to give serious consideration to the possibility of recommending that the government establish a facility for the permanent residential care and treatment of youths and adult with autism disorders.  The need for such a facility has been highlighted by stories similar to the young SJ woman's story for many years but the problem is simply ignored. 

Any attempt to discuss development of  a facility is treated with disdain by adherents to the New Brunswick Association for Community Living philosophy  that dominate New Brunswick public policy making for persons with disabilities.  Rather than find a sustainable, systemic  residential care and treatment solution  for persons with serious autism issues who can not live in group homes the NBACL dominated public policy mindset is to let severely autistic adults live in Psychiatric and other hospital wards,  live temporarily on youth prison grounds and hotels and even send them out of the country to long term care and treatment, at considerable public expense in Maine. For public decision makers who adhere to this philosophy anything is better than acknowledging that the simplistic community ideology does not provide a realistic, sensible solution for youth and adults with severe autism disorder deficits.

Autism experts have made submissions to the New Brunswick government on these issues and I have made representations as an autism society representative  to governments both Liberal and Conservative, about the need for a Fredericton based (close to NB's autism expert base) adult autism residential care facility, spoken with media and commented several times over the last decade all to no avail:

October 2005, Toronto Star

Autistic boy kept in New Brunswick jail

No other place for him to stay 13-year-old must go to U.S. hospital. No other place for him to stay
13-year-old must go to U.S. hospital
HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province.
Provincial officials confirmed yesterday the boy is living in a visitor's apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.
They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre.
Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.
"They put this boy in a criminal facility because he is autistic," said Harold Doherty, a board member of the Autism Society of New Brunswick.
"Now we are exporting our children because we can't care for them. This is Canada, not a Third World country.
"We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't."
Liberal MLA John Foran echoed his concern. "This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution."
Provincial officials yesterday insisted critics are misrepresenting the nature of the boy's situation and that in fact the province has done everything it can to help him.
"This individual is not being held, and is not incarcerated," said Lori-Jean Johnson, spokeswoman for the family and community services department.
"He has housekeeping, bath and a separate entrance. We are just utilizing existing resources."
Privacy laws prevent officials from discussing anything that would reveal the boy's identity, including details of his previous living situation and the whereabouts of his parents.
This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist's recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day.
Johnson said she does not know any details of his care.
Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada.
He said staff at most group homes in New Brunswick aren't trained to deal with autism and don't understand the disorder.
"If you don't understand autism, things can become very bad very quickly," said Doherty, who has a 9-year-old son with the disorder.
"We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided."
Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people.
"We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case."
The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.
The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents.
A Spurwink representative did not return a phone call from the Toronto Star.
Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he's being sent to Maine, rather than a Canadian facility in another province.
As I am quoted saying in the 2005 Toronto Star we (Autism Society NB) had been pushing for several years for better autism care facilities here in NB.  The 2005 incident did not result in action from the Liberal government of the day.

Doherty, a lawyer, is now in the fight of his life. As Conor nears adulthood, Doherty’s greatest worry is that the province doesn’t have the proper services for someone like Conor to maintain a high quality of life when they leave the public school system. He’s afraid Conor will fall through the cracks.
“My big fear is that he will simply be put into a room in Campbellton in the psychiatric hospital without any real life to live once I’m too old or deceased.
“On the other hand, I don’t want him dumped into one of the group homes they have.
“They don’t have staff trained to help him and they don’t have enough programs to really work with someone like my son.”

Autism is a developmental disorder that affects a person’s communication and social skills. The severity of the disorder ranges from the severe form that Conor has to Asperger’s, a more mild form depicted in movies like Rainman. The Centre for Disease Control and Prevention says one in 110 children have autism.

New Brunswick provides care both in a patient’s home and in residential facilities for more than 6,250 adults under 65 with disabilities, including autism, says Department of Social Development spokesman Mark Barbour.
But Barbour admits the province needs to do more to help autistic adults.
“There is a need for more specialized services for autistic youth and adults, whose behaviours or conditions are severely impaired.
“These individuals require services and supports designed to specifically meet their high care needs.”
The province wants to build an autism residential facility, which would provide permanent care for severely autistic adults who can’t live on their own, Barbour said."

Department of Social Development spokesperson Mark Barbour's March 2011 comments about the province's desire to build a permanent care for severely autistic adults have not been followed by any subsequent public statements to indicate that the stated intention was anything more than a public relations sound bite.

June 2011 - Facing Autism in New Brunswick 

"In Autism resources in N.B. are a 'patchwork system' Jacques Gallant of the Times & Transcript has reported on the state of autism services here in New Brunswick (Canada, not New Jersey).  As Mr. Gallant reports, our early autism intervention services have received justified praise and our schools have made significant progress although much improvement is needed especially in rural schools. I am interviewed and discuss, in particular, my concerns about the wholly inadequate state of adult autism specific residential care facilities in New Brunswick.  We have group homes with untrained staff who can't accommodate the most severely challenged autistic adults and we have psychiatric hospital in northern New Brunswick far from most of our population.  Other than that we have resorted to temporary housing in hotels, general hospital wards, youth prison grounds and shipping our autistic population out of the province and even out of the country to nearby Maine.  New Brunswick needs an autism specific residential care facility, based in Fredericton, close to the autism expertise that has been developed at the UNB-CEL Autism Intervention Training program and the Stan Cassidy Centre Autism team.  The center should have a variety of configurations and buildings to accommodate the differing needs of the range of autistic adults on the spectrum.  It should have the trained staff and quick access to the autism professionals in Fredericton to help provide continued adult education, recreation and life enjoyment opportunities for autistic adults in New Brunswick. " 

Costs have always been a challenge in establishing a permanent residential care facility for New Brunswick adults with severe autism.  That is a given and always will be.  There are however serious costs associated with the failure to build such a facility.  The primary consideration blocking the establishment of a residential care facility in Fredericton where autistic adults could receive some expert autism care during their adult years has been the overwhelming domination of social policy decision making by the "community", "inclusion" mindset of the NBACL and its partners in government.  It is simply not possible for those who subscribe to that belief system to consider alternatives. 

During the last election UNB Psychology Professor Emeritus and Clinical Psychologist Paul McDonnell, New Brunswick's foremost autism expert, who has done more for autistic children and adults then anyone else in the province commented on CBC about the need for an adult autism residential and treatment facility:

September 2010, CBC, N.B. can be a leader in autism services (Analysis, Paul McDonnell)

"Our greatest need at present is to develop services for adolescents and adults.

What is needed is a range of residential and non-residential services and these services need to be staffed with behaviorally trained supervisors and therapists.Some jurisdictions in the United States have outstanding facilities that are in part funded by the state and provide a range of opportunities for supervised and independent living for individuals with various disabilities.The costs of not providing such services can be high financially and in terms of human costs. As a psychologist in private practice I know there are large numbers of older individuals who are diagnosed later in life with Asperger's Syndrome that have no access to professional services of any kind.

In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family, or the community.
We can do much, much better.

We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."

The  realities facing severely autistic adults in NB have been clear for many years.  Periodically those realities show up in, usually unpleasant, media reports.  Our governments however have simply chosen to ignore those realities.  They are stuck, not on financial costs but on their ideological mindset, the refusal to implement a system as described by Professor McDonnell.  New Brunswick's autistic adults need a centralized, adult facility in Fredericton close to our autism expertise which could provide permanent residential care and treatment for severely autistic adults and could provide expert assistance to autism specific adult group homes, operating with autism trained staff, in communities around the province.   Such a system would actually address the adult care realities that surface periodically in media reports and help New Brunswick's severely autistic adults live and enjoy their adult years.  

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